Argh. I'm an unworthy blogger who doesn't blog enough! Sorry.
You may have guessed, from my usual pattern of awol, that I've been not so well again :-(
I'm pleased to say that things are totally on the mend again and I'm deffo back on track. Basically that naughty temperature spike and slightly iffy chest wasn't 'nothing' as I would have liked it to be... it just carried on and on, till I was lying around with a nasty cough and a 40 degree temp yet again. So in I went to hotel Chest for IVs amongst other stuff. Happily for me and my body we did no change with my steroids and just blasted it with antibiotics, and it absolutely has worked. Which means it was just infection related NOT pneumonia. Incidentally though, my chest x-ray has cleared right up with this admission >grin<.
My lung funko is up to 81% from about 70%, and my gas transfer is 45% the last time I did it... which is down a bit, but my oxygen requirements are quite steady so I'm not really losing any sleep over that!
In terms of exercise, it's been a royal flop to be honest, as I didn't get back to any real workouts between the operation (the muscles/nerves have only just stopped hurting and seizing) and coming down with the infection. Which I can pretty much conclude means that I got the infection because of not being able to cough or breathe deeply for exercise :-/ not helpful!
It's okay though, I'm coughing away nicely now and getting all my clearance done - also making good use of accapella and have had pulmozyme 2 x daily for the past couple of weeks. I'm up to doing two sessions of exercise a day now too! I do a harder 'out of breath' session earlier on, where at the moment it's about 2 km in 20 minutes, on 1 litre of O2. Then later on, a lap of the park at an easy pace (30 mins).
I'm aiming to have a little 2 minute run tomorrow before I leave LCH, and see roughly what my sats do and what oxygen to have on, since it's been so long since my last run. It should be okay, more muscle weakness and jellylegedness than lung stuff.
From there, I think the sensible thing to do will be to keep at about the same level of walking daily, then add in short running intervals as I feel able. I'll do 2 minutes tomorrow and all being well, the same for the next few days. Then next week up it to 5 minute intervals.
Plenty to think about, that's for sure... I've gained back some weight (dropped to 40 the other week) with the old NG feeds giving me 2400kcal overnight, so I'll plug on with that and then stop as soon as I can get away with it!
And er, that's about all I can think of at the moment! I'll blog away with my return to training, and let you know how it all goes!
Take care xxx
Wednesday 29 July 2009
Monday 13 July 2009
This is ROCK AND ROLL!!!
OH. MY. GOD. I went to wembley stadium last night to see not just Reverend and the makers, not just Kasabian, not just The Enemy, but all those and OASIS!!
It was probably the single most amazing and breathtaking days of my life, just awesome. There was about 70 thousand in there, heuge stage but it still looked small in Wembley (!), we jumped up and down, Oasis sung wonderwall, we all got soaked in beer, we had tasty burgers, I got a t-shirt, I'm in some random people's videos, I wore bright pink drainpipes, I shouted I love you Noel... erm... FOOKIN BRILLIANT!!
We had a slight moment of worry that we may not make it on saturday evening as my temperature went up and oddly enough I fainted after eating dinner. Only briefly but not very pleasant and I spent the rest of the evening crashed out on the sofa. It must have been a combo of things though - I'd done quite a lot of walking and it was chilly outside, my temperature came up too quickly, I had a bit of wine and a pretty rich fish pie that my cousin made... and just came over all dizzy. Next stop - the floor.
However, we were patient enough to just see what happened, I'd already taken painkillers so the temp was on it's way down again anyway, I had oxygen on the whole evening, took it easy, and decided not to do my feed as it raises your body temperature with you digesting it and everything. Instead I just did 1200mls of water over 8 hrs with some electrolyte sachets in it, and subsequently woke up feeling absolutely fine. And OFF WE WENT!!!!
I feel so lucky and so buzzing from it all, there wasn't a single song that you kind of wanted to finish and move on to the next, just endless brilliant performing. Epic.
My chest isn't brilliant, but in all honesty, I spent all night singing and cheering at the top of my voice lol... and it just so happened that we were right behind the only people in the stadium who thought it was fine to keep smoking. They were told by a guard, then lit up again, then I asked him, then he lit up again, and so on... about 5 ciggerettes I've smoked then... so I'm chesty and tight and making firm friend with ventolin nebs again. And bricanyl... and symbicort. Drugs.
I had a day without planned exercise per se, as we were walking about 3 km in total around wembley to and from our car park at the other end of town, and I was on my feet dancing for about 3 hours. Plus I slipped in an accapella session before we left to try and stay nice and clear.
My plan today is to erm, probably try and cover 3 miles in two sessions. Should be manageable. And this time, no wine and fish pie straight afterwards!
Ciou xxx
It was probably the single most amazing and breathtaking days of my life, just awesome. There was about 70 thousand in there, heuge stage but it still looked small in Wembley (!), we jumped up and down, Oasis sung wonderwall, we all got soaked in beer, we had tasty burgers, I got a t-shirt, I'm in some random people's videos, I wore bright pink drainpipes, I shouted I love you Noel... erm... FOOKIN BRILLIANT!!
We had a slight moment of worry that we may not make it on saturday evening as my temperature went up and oddly enough I fainted after eating dinner. Only briefly but not very pleasant and I spent the rest of the evening crashed out on the sofa. It must have been a combo of things though - I'd done quite a lot of walking and it was chilly outside, my temperature came up too quickly, I had a bit of wine and a pretty rich fish pie that my cousin made... and just came over all dizzy. Next stop - the floor.
However, we were patient enough to just see what happened, I'd already taken painkillers so the temp was on it's way down again anyway, I had oxygen on the whole evening, took it easy, and decided not to do my feed as it raises your body temperature with you digesting it and everything. Instead I just did 1200mls of water over 8 hrs with some electrolyte sachets in it, and subsequently woke up feeling absolutely fine. And OFF WE WENT!!!!
I feel so lucky and so buzzing from it all, there wasn't a single song that you kind of wanted to finish and move on to the next, just endless brilliant performing. Epic.
My chest isn't brilliant, but in all honesty, I spent all night singing and cheering at the top of my voice lol... and it just so happened that we were right behind the only people in the stadium who thought it was fine to keep smoking. They were told by a guard, then lit up again, then I asked him, then he lit up again, and so on... about 5 ciggerettes I've smoked then... so I'm chesty and tight and making firm friend with ventolin nebs again. And bricanyl... and symbicort. Drugs.
I had a day without planned exercise per se, as we were walking about 3 km in total around wembley to and from our car park at the other end of town, and I was on my feet dancing for about 3 hours. Plus I slipped in an accapella session before we left to try and stay nice and clear.
My plan today is to erm, probably try and cover 3 miles in two sessions. Should be manageable. And this time, no wine and fish pie straight afterwards!
Ciou xxx
Thursday 9 July 2009
Progressin noicely fenk youuu
Hiiii,
As expected, I've had a much better couple of days since my return to the homeland. Firstly I got a good nights sleep which always changes your perspective (I was feeling rather snowed under on the journey back) and makes you think straight.
Next, I had a driving lesson just for an hour the next morning and even though it went okay and nothing major made me worried, I decided that I would cancel my driving test next thursday as I'm just not confident enough with the town driving, my left side isn't that strong yet (makes putting the handbrake on and quick gear changes harder). I think it's the right choice as I know that even if I passed by fluke I wouldn't be happy driving around guildford alone.
This means I'll be re-doing my theory at some point in August. Very frustrating but that's that and I'm not going to lose anymore sleep over it. :-/
I've been sticking with the 40ish minutes of walking in it's various forms per day... managing a 30 minute treadmill walk on wednesday and improving to a hilly 40 minutes this morning. And I'm not going that slowly anymore now that the muscles are less painful, so gradually I'm getting closer to the jogging stage! Not long! And of course it needs to be fairly hasty as we've got the Cancer research UK 10k on September 13th.
Of course it doesn't matter if I ended up walking most of it, but I don't want to. So I'll still be trying to run at least half. I've got nearly 2 months so it seems doable given my fitness before this setback and how well things were progressing.
Since I've done 40 minutes quite comfortably this morning, I'll see about doing a bit more later, maybe 10 minutes at a faster pace on treadmill?
I think my goal for two weeks time is to be running again perhaps for around 5 minutes at a time, about 2-3 in a session. And be doing it 2-3 times a week. But I'll have to play it by ear as my breathlessness is still bit more than I'd like even at rest (gas transfer dropped a bit), and I'm aware I might have to use more o2 temporarily.
We had a really cool day yesterday, having spent ALL morning practically tearing my hair out over trying to get hold of the home enteral company to arrange delivery and 'pump training', we eventually got it sorted for today, so we could go out in the afternoon. I had birthday money to spend (new look vouchers, thanks Sis) so naturally clothes shopping all the way, and a nice club sandwichee in maison Blanc. Dontcha know.
I got a brilliant pair of bright pink skinnies from H & M and a black patterned Tshirt to go with it to wear to the OASIS concert on Sunday!!!! Plus the Enemy and Kasabian :-0 I haven't known about it for that long but these are three of my all times faves and it will be EPIC. It's my first concert too, what a way to begin!
Yep, Oasis, the Enemy and Kasabian all under one roof (well, wembley). I might need more than one pair of pants.
xxx
As expected, I've had a much better couple of days since my return to the homeland. Firstly I got a good nights sleep which always changes your perspective (I was feeling rather snowed under on the journey back) and makes you think straight.
Next, I had a driving lesson just for an hour the next morning and even though it went okay and nothing major made me worried, I decided that I would cancel my driving test next thursday as I'm just not confident enough with the town driving, my left side isn't that strong yet (makes putting the handbrake on and quick gear changes harder). I think it's the right choice as I know that even if I passed by fluke I wouldn't be happy driving around guildford alone.
This means I'll be re-doing my theory at some point in August. Very frustrating but that's that and I'm not going to lose anymore sleep over it. :-/
I've been sticking with the 40ish minutes of walking in it's various forms per day... managing a 30 minute treadmill walk on wednesday and improving to a hilly 40 minutes this morning. And I'm not going that slowly anymore now that the muscles are less painful, so gradually I'm getting closer to the jogging stage! Not long! And of course it needs to be fairly hasty as we've got the Cancer research UK 10k on September 13th.
Of course it doesn't matter if I ended up walking most of it, but I don't want to. So I'll still be trying to run at least half. I've got nearly 2 months so it seems doable given my fitness before this setback and how well things were progressing.
Since I've done 40 minutes quite comfortably this morning, I'll see about doing a bit more later, maybe 10 minutes at a faster pace on treadmill?
I think my goal for two weeks time is to be running again perhaps for around 5 minutes at a time, about 2-3 in a session. And be doing it 2-3 times a week. But I'll have to play it by ear as my breathlessness is still bit more than I'd like even at rest (gas transfer dropped a bit), and I'm aware I might have to use more o2 temporarily.
We had a really cool day yesterday, having spent ALL morning practically tearing my hair out over trying to get hold of the home enteral company to arrange delivery and 'pump training', we eventually got it sorted for today, so we could go out in the afternoon. I had birthday money to spend (new look vouchers, thanks Sis) so naturally clothes shopping all the way, and a nice club sandwichee in maison Blanc. Dontcha know.
I got a brilliant pair of bright pink skinnies from H & M and a black patterned Tshirt to go with it to wear to the OASIS concert on Sunday!!!! Plus the Enemy and Kasabian :-0 I haven't known about it for that long but these are three of my all times faves and it will be EPIC. It's my first concert too, what a way to begin!
Yep, Oasis, the Enemy and Kasabian all under one roof (well, wembley). I might need more than one pair of pants.
xxx
Tuesday 7 July 2009
The return of the tummmyyyy
Alright, I've caved... I'm going do do overnight feeds at home. But only for a little while just to get a boost in my weight, then I can leave it. And note the word HOME!! I'm off today and this time for good ;-)
I've not increased my exercise much beyond the 40 minutes of walking a day and I'm a bit frustrated with this although I think the main reason isn't soo much because I'm too breathless but because it's just ridiculously hot and humid. I feel like a bunch of bananas that's left in the bag you buy them in - all sweaty and sticky. I know it's the same for everyone but it make you so grouchy and rubbishy doesn't it!! Hopefully my room at home will stay nice and cool so I can actually get some sleep, especially since the feeds make me a bit fidgety and restless anyway.
I've opted with the fresubin 2kcal, 1litre that I'll pour into the hangbag myself, instead of the slightly fishy fresubin energy which is 1500kcal per litre. 2000kcal overnight and then I can just eat what I like in the day, not stress constantly over picking the higher calorie stuff all the time.
We decided that there's not alot more I can achieve by being here than being at home and just keeping in touch, as I feel okay and just need to get back my fitness and heal up. The cut's come together okay and I don't think it'll be really visible once it's faded.
I'll update with a contingency plan on training ect when I'm home! xxx
I've not increased my exercise much beyond the 40 minutes of walking a day and I'm a bit frustrated with this although I think the main reason isn't soo much because I'm too breathless but because it's just ridiculously hot and humid. I feel like a bunch of bananas that's left in the bag you buy them in - all sweaty and sticky. I know it's the same for everyone but it make you so grouchy and rubbishy doesn't it!! Hopefully my room at home will stay nice and cool so I can actually get some sleep, especially since the feeds make me a bit fidgety and restless anyway.
I've opted with the fresubin 2kcal, 1litre that I'll pour into the hangbag myself, instead of the slightly fishy fresubin energy which is 1500kcal per litre. 2000kcal overnight and then I can just eat what I like in the day, not stress constantly over picking the higher calorie stuff all the time.
We decided that there's not alot more I can achieve by being here than being at home and just keeping in touch, as I feel okay and just need to get back my fitness and heal up. The cut's come together okay and I don't think it'll be really visible once it's faded.
I'll update with a contingency plan on training ect when I'm home! xxx
Sunday 5 July 2009
Roll with the punches, kicks, and slaps.
Hi,
Apologies for no post yesterday, but it was one of those days where if i blogged, it would all be negative. I've had to give myself a bit of a pep-talk about things and get my head straight after this week, which I'm going to be honest, has not been one of my best!
I felt really sore and tight and uncomfortable all day yesterday and struggled alot to do my walks (2 x 20 mins). I don't really have a problem with making myself do stuff if it'll be good for me even though I know it's going to hurt and I know I'm going to feel rubbish doing it... but sometimes it's just finding that bit of 'oomph' that drives you on and keeps you focused. Walks completed and a fraction of the fluid retention coming off, I thought I'd at least have a good nights rest as I was tired all day but due to the steroid factor suddenly swooping in, I pretty much stared into darkness until about 3am, absolutely as wide awake and twitchy as you get... then gave in a read untill 4, when I felt just dozey enough for sleep. I've got up at 8 and todays been so much better. I've dropped almost all the fluid off now so I don't feel puffy, my back is less painful and more useable, and my energy level is good. So erm, don't really know why I felt so depressed last night!
I think sometimes it's okay to get down when some things don't go your way, but after a bit, you have to find comfort in things that do. Like on one hand, I'm not 100%, I've slipped and it's going to be quite hard work yet again to get back to where I was fitness wise, not to mention my driving test and social life... but on the other, I've recovered really quite well so far from what was quite a serious op only 6 days ago, my exercise has already gone up a bit, I'm looking quite well, I'll not be in LCH much longer, and I've had a nice time at home this weekend.
And above all, I know I can beat this thing because I've done it before! So I'll just have to go through the same process, and I'll get back to normal again. With regards to my driving, you can't have it all. Sometimes things happen that are shit, and if they get in the way of life, it's also shit. But it's not the end of the world. X
Apologies for no post yesterday, but it was one of those days where if i blogged, it would all be negative. I've had to give myself a bit of a pep-talk about things and get my head straight after this week, which I'm going to be honest, has not been one of my best!
I felt really sore and tight and uncomfortable all day yesterday and struggled alot to do my walks (2 x 20 mins). I don't really have a problem with making myself do stuff if it'll be good for me even though I know it's going to hurt and I know I'm going to feel rubbish doing it... but sometimes it's just finding that bit of 'oomph' that drives you on and keeps you focused. Walks completed and a fraction of the fluid retention coming off, I thought I'd at least have a good nights rest as I was tired all day but due to the steroid factor suddenly swooping in, I pretty much stared into darkness until about 3am, absolutely as wide awake and twitchy as you get... then gave in a read untill 4, when I felt just dozey enough for sleep. I've got up at 8 and todays been so much better. I've dropped almost all the fluid off now so I don't feel puffy, my back is less painful and more useable, and my energy level is good. So erm, don't really know why I felt so depressed last night!
I think sometimes it's okay to get down when some things don't go your way, but after a bit, you have to find comfort in things that do. Like on one hand, I'm not 100%, I've slipped and it's going to be quite hard work yet again to get back to where I was fitness wise, not to mention my driving test and social life... but on the other, I've recovered really quite well so far from what was quite a serious op only 6 days ago, my exercise has already gone up a bit, I'm looking quite well, I'll not be in LCH much longer, and I've had a nice time at home this weekend.
And above all, I know I can beat this thing because I've done it before! So I'll just have to go through the same process, and I'll get back to normal again. With regards to my driving, you can't have it all. Sometimes things happen that are shit, and if they get in the way of life, it's also shit. But it's not the end of the world. X
Friday 3 July 2009
Home leave soon!! But first, many, many blood tests.
Ahh, I'm having a lovely weekend at home with Mum, Dad and Claire (my georgeous cousin who's living with us for a while, with her pooch)! I'm off home later tonight and will come back sunday night, with intentions of being out for good next thursday, which doesn't seem too bad now.
The quirky little LCH catch is that as I'll need to come off this IV hydrocortisone, and need higher doses of steroids again for a while which won't be that easy with the triamcinalone jabs I've been having, I'm having my prednisolone absorption test and cortisol level testing today... so I had my 9am cortisol/ hydrocort. levels, nightmare, we had to use the vein in my groin and it fricking hurt.... then half dose of hydrocort. and first dose of prednisolone and then more blood at 11am, then 12.30, then one more at 3pm. Phew. Basically we think that I will absorb the pills, but that I may just need a higher dose to get the right blood levels. Which gives me a bit more freedom then having to come up for jabs all the time!
I finish my IVs today, so no home IVs to do which is going to be lovely! Just voriconazole and nebbing, and steroids. And the customary prescription for food and lots of it.
I'm not sure if I'll get much driving done as the left side is still a bit weak and numb... but if I could do an easy half an hour I'd be happy, just see where I'm at ya knowww.
In terms of exercise, I've got a little bit of a plan... I think since the pain in my back is hardly bothering me at all now (!) it's just a bit stiff and touchy, and my lungs are staying quite good, I'll aim to get back up to a better pace for walking.
It won't be the normal 4mph but I think I'll go for 20 minutes at 3.5, twice a day at home and see how it goes. Then I can report back for a bit more of an increase come monday. I think I just need to keep well rested and get my legs stretched and blood pumping a bit again rather than expect anything great after such a week. But I imagine that there's going to be nothing to stop me having a bit of a run in a couple of weeks time! Goody...
Anyways, I'll update you from the abode this weekendo. Have a goodern you lot xxx
The quirky little LCH catch is that as I'll need to come off this IV hydrocortisone, and need higher doses of steroids again for a while which won't be that easy with the triamcinalone jabs I've been having, I'm having my prednisolone absorption test and cortisol level testing today... so I had my 9am cortisol/ hydrocort. levels, nightmare, we had to use the vein in my groin and it fricking hurt.... then half dose of hydrocort. and first dose of prednisolone and then more blood at 11am, then 12.30, then one more at 3pm. Phew. Basically we think that I will absorb the pills, but that I may just need a higher dose to get the right blood levels. Which gives me a bit more freedom then having to come up for jabs all the time!
I finish my IVs today, so no home IVs to do which is going to be lovely! Just voriconazole and nebbing, and steroids. And the customary prescription for food and lots of it.
I'm not sure if I'll get much driving done as the left side is still a bit weak and numb... but if I could do an easy half an hour I'd be happy, just see where I'm at ya knowww.
In terms of exercise, I've got a little bit of a plan... I think since the pain in my back is hardly bothering me at all now (!) it's just a bit stiff and touchy, and my lungs are staying quite good, I'll aim to get back up to a better pace for walking.
It won't be the normal 4mph but I think I'll go for 20 minutes at 3.5, twice a day at home and see how it goes. Then I can report back for a bit more of an increase come monday. I think I just need to keep well rested and get my legs stretched and blood pumping a bit again rather than expect anything great after such a week. But I imagine that there's going to be nothing to stop me having a bit of a run in a couple of weeks time! Goody...
Anyways, I'll update you from the abode this weekendo. Have a goodern you lot xxx
Thursday 2 July 2009
I'll have what she's having....
Ok bloddy hell!! I'm still good here, much better than this morning and I think I know why!! I was having tramadol (like a pill version of morphine) since coming off of morphine yesterday, and all morning I was properly out of it, could barely keep my eyes open after my last post and alarmingly when I closed my eyes it was like a kaleidiscope, then some weird 'awake' dream lijke being on a swing and then quickly having to open my eyes and make sure I was on the bed coz I felt like I was actually swinging. It just went on and on, everytime I closed my eyes I was hallucinating. So I didn't take anymore tramadol, and I've been fine all afternoon. Thank god for that - I got really scared it was voriconazole which I need to be on for a week or two!!
I've got a very numb left side since the op, which I think is kind of good as I'm doing well with no pain relief now, but erm... hopefully I'll get feeling back in my left boob and ribs at some point!! Hope they didn't cut through a nerve lol...
I've got a very numb left side since the op, which I think is kind of good as I'm doing well with no pain relief now, but erm... hopefully I'll get feeling back in my left boob and ribs at some point!! Hope they didn't cut through a nerve lol...
The month that was... this month
Sorry for the appauling absence of blogging this month. I'll try harder!
Firstly, the good news, is that I am doing okayish at the moment, and that a few weeks back I managed nearly 30 minutes of non stop running on 6 lpm o2, at a speed of 6.5mph. Which was very encouraging indeed! So much so infact, that I've entered a cancer research UK 10k! Brilliant to do as well since my Mum is recovering from breast cancer, and has got really good care which is probably down to research and funding in to new treatments.
It's September the 13th, this 10k, and since it's hilly I'm aiming to run at least half of it, and walk when I need to. I'll have very kind running friends run with me to help with the 02, so we'll be a right motley crew.
Then fast forward to Friday 19th. I had a brilliant clinic appointment and shuttle walk test showing a MAHOOOOsive increase in my lung functions and x-ray looking great. I didn't desaturate at all walking very slowly, only a little bit at a normal pace, and then low 80's once brisk-jog pace. So considering that's on room air, not bad at all, and means that I need about half the amount of 02 to exercise than a few months back!
Unfortunately, having practically punched the air with chuffedness on friday, I could only throw my hands up in disbelief when I got a temperature of 38.2 on Saturday and then 39.5 on Sunday. Since my chest felt clear and my only complaint was feeling perhaps slightly more breathless (which you can get with fevers anyway), I would have been happy to try and keep it down with paracetamol and wait and see. And My consultant also said she was happy either way, but to be sensible... and by the end of Sunday, it appeared not so sensible to leave it as it wasn't staying down at all.
Poor Dad had to drive me up to LCH that evening to be admitted. I wasn't feeling awful but my temp was still 39 and my heart was really pounding with it, so we Started up some Iv antibiotics and fluids for Sunday night.
My temperature carried on being a complete pain in the buttock all week, still spiking up high and my chest x-ray looked a bit worse again, so I had a bronchoscopy (was heavily sedated this time lol) and we agreed that if it showed nothing and I was still the same, then we should do that open lung biopsy. This time I could kind of see that it was the only way to be sure of an organising pneumonia and not something that hasn't shown up elsewhere.
Surprise surprise, the bronch shed no light on the matter, so Monday I was carted off down to theatre and basically they cut in to your lung and take a bit out to have a good look at it and do loads of tests on it, then stitch it back together and you have a chest drain to keep the lung inflated while it mends. So an exciting few days on the High Dependancy Unit... I don't remember much of the first day and mostly slept although apparently made the staff run about a bit with my breathing straight after surgery. Probably down to asthma, but they had to put the breathing tube back in again lol... The next day I was up and able to walking around a bit with the physio and all my stands and pumps and general paraphenalia. And then yesterday, out came the pump, lung stayed up very nicely and up I popped back to CFU.
The very early initial results have shown some sort of fungal problem although it's not definate, but I've been started on Voriconazole anyway. I've also been on my old friend, hydrocortisone IV since monday. 300mg a day. Look like a hamster. Weigh 46 kg now compared to 41 on Monday. Make it stop!!
I'm still feeling a bit shattered probably because I'm taking stronger painkillers and they do knock you out if you aren't used to them... but in terms of pain it's not that bad today. Just a bit tweaky and strained if I'm in certain positions. I thought that the incision would be smaller so I was quite surprised to see a 2-3 inch scar across my back. It seems to be just low enough that most tops would cover it though!
I'll do a bit more updating later when I might know a bit more too. Will probably sleep alot again... yawn. xxx
Firstly, the good news, is that I am doing okayish at the moment, and that a few weeks back I managed nearly 30 minutes of non stop running on 6 lpm o2, at a speed of 6.5mph. Which was very encouraging indeed! So much so infact, that I've entered a cancer research UK 10k! Brilliant to do as well since my Mum is recovering from breast cancer, and has got really good care which is probably down to research and funding in to new treatments.
It's September the 13th, this 10k, and since it's hilly I'm aiming to run at least half of it, and walk when I need to. I'll have very kind running friends run with me to help with the 02, so we'll be a right motley crew.
Then fast forward to Friday 19th. I had a brilliant clinic appointment and shuttle walk test showing a MAHOOOOsive increase in my lung functions and x-ray looking great. I didn't desaturate at all walking very slowly, only a little bit at a normal pace, and then low 80's once brisk-jog pace. So considering that's on room air, not bad at all, and means that I need about half the amount of 02 to exercise than a few months back!
Unfortunately, having practically punched the air with chuffedness on friday, I could only throw my hands up in disbelief when I got a temperature of 38.2 on Saturday and then 39.5 on Sunday. Since my chest felt clear and my only complaint was feeling perhaps slightly more breathless (which you can get with fevers anyway), I would have been happy to try and keep it down with paracetamol and wait and see. And My consultant also said she was happy either way, but to be sensible... and by the end of Sunday, it appeared not so sensible to leave it as it wasn't staying down at all.
Poor Dad had to drive me up to LCH that evening to be admitted. I wasn't feeling awful but my temp was still 39 and my heart was really pounding with it, so we Started up some Iv antibiotics and fluids for Sunday night.
My temperature carried on being a complete pain in the buttock all week, still spiking up high and my chest x-ray looked a bit worse again, so I had a bronchoscopy (was heavily sedated this time lol) and we agreed that if it showed nothing and I was still the same, then we should do that open lung biopsy. This time I could kind of see that it was the only way to be sure of an organising pneumonia and not something that hasn't shown up elsewhere.
Surprise surprise, the bronch shed no light on the matter, so Monday I was carted off down to theatre and basically they cut in to your lung and take a bit out to have a good look at it and do loads of tests on it, then stitch it back together and you have a chest drain to keep the lung inflated while it mends. So an exciting few days on the High Dependancy Unit... I don't remember much of the first day and mostly slept although apparently made the staff run about a bit with my breathing straight after surgery. Probably down to asthma, but they had to put the breathing tube back in again lol... The next day I was up and able to walking around a bit with the physio and all my stands and pumps and general paraphenalia. And then yesterday, out came the pump, lung stayed up very nicely and up I popped back to CFU.
The very early initial results have shown some sort of fungal problem although it's not definate, but I've been started on Voriconazole anyway. I've also been on my old friend, hydrocortisone IV since monday. 300mg a day. Look like a hamster. Weigh 46 kg now compared to 41 on Monday. Make it stop!!
I'm still feeling a bit shattered probably because I'm taking stronger painkillers and they do knock you out if you aren't used to them... but in terms of pain it's not that bad today. Just a bit tweaky and strained if I'm in certain positions. I thought that the incision would be smaller so I was quite surprised to see a 2-3 inch scar across my back. It seems to be just low enough that most tops would cover it though!
I'll do a bit more updating later when I might know a bit more too. Will probably sleep alot again... yawn. xxx
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